Hi Everyone,
Guest blogger Grace here. We're still weathering a pretty rough spell (crushing fatigue), but we definitely appreciate everyone's good thoughts. Ethan has a chemo infusion scheduled for this Wednesday, and he, along with his oncologist, are trying to decide how to maximize the benefits of chemo, while managing the sucky side effects. Keep us in your thoughts!
If you are a WWU person, there's a blood drive on campus next week. I didn't know that Western faculty, staff, and students rank as one of the largest donor groups. Go Vikings!
http://www.piersystem.com/go/doc/1538/919107/
Ethan has mentioned in the past that if you want to "do" something to help, giving blood would be a something worthwhile. Over the summer, he received several blood and platelet transfusions when his numbers were critically low. I know that no one likes being stuck with needles, but it's really a good contribution, and I hope to join the ranks of blood donor next week (still haven't done it myself).
~Grace
Monday, October 11, 2010
Saturday, October 9, 2010
More bad days
Things are not going well. Every day has been a bad day lately. I had to cancel my trip to see George and Bennett in Southern California this weekend. I'm sorry but I am not checking email or messages regularly.
Ethan
Ethan
Wednesday, October 6, 2010
Tuesday, October 5, 2010
Good day
Today was a good day. I felt good physically. I went to the university and played basketball. Four games of half court. My teams went 3-1. I definitely pushed myself a little physically, but I felt good afterward. We'll see how I feel tomorrow. Max and I were working the pick-and-roll. He was giving me some great passes on my rolls to the hoop. It reminded me of when my best friend Eric and I used to run the pick-and-roll. We had it down to where, even if our defenders knew it was coming, we could still almost always get a good shot off it.
Speaking of Eric, it's his birthday today. I love you, buddy! I feel lucky to know you.
I spent the afternoon in my office at WWU, doing some work-related errands. It felt good to be there. It reminded me of my normal life, in a good way.
When I got home, I played with Seth and Miles. Miles was cracking Seth and me up. He is one cute little guy. Miles and Seth wanted to talk to Grandpa Chuck, so we called him, which was nice.
In the evening Seth and I played "Settlers of Catan" (a board game) with our friends John, Julie, and Callum, which was fun. A good end to a good day.
Go Giants! (of baseball, not football)
Ethan
Speaking of Eric, it's his birthday today. I love you, buddy! I feel lucky to know you.
I spent the afternoon in my office at WWU, doing some work-related errands. It felt good to be there. It reminded me of my normal life, in a good way.
When I got home, I played with Seth and Miles. Miles was cracking Seth and me up. He is one cute little guy. Miles and Seth wanted to talk to Grandpa Chuck, so we called him, which was nice.
In the evening Seth and I played "Settlers of Catan" (a board game) with our friends John, Julie, and Callum, which was fun. A good end to a good day.
Go Giants! (of baseball, not football)
Ethan
Monday, October 4, 2010
Monday update
Yesterday (Sunday) was a good day. I felt the best, physically and mentally, that I have in a while. I didn't struggle to get out of bed in the morning for the first time in a long time. I spent the day in a state of mild euphoria at the fact that I felt almost normal.
Grace's parents visited and we walked down to Boulevard Park and then around the boardwalk. Some pics: http://remmel.shutterfly.com/1887
Yesterday was the last chance to do that walk for a while, as the city is closing a section of the boardwalk to replace it. They say it will be closed for about 4 months.
It was nice to see Grace's parents. I really like them, and Grace's whole family for that matter. They have always been kind, warm, and welcoming to me and my family.
I feel OK today. Not as good as yesterday, but certainly better than most of the past couple weeks. I am so glad to not be getting chemo today.
In a short-notice decision, I bought tickets for Seth and me to visit my friend George and his son Bennett in Southern California (Redlands) this weekend. I'm excited about that. Carpe Diem!
Ethan
Grace's parents visited and we walked down to Boulevard Park and then around the boardwalk. Some pics: http://remmel.shutterfly.com/1887
Yesterday was the last chance to do that walk for a while, as the city is closing a section of the boardwalk to replace it. They say it will be closed for about 4 months.
It was nice to see Grace's parents. I really like them, and Grace's whole family for that matter. They have always been kind, warm, and welcoming to me and my family.
I feel OK today. Not as good as yesterday, but certainly better than most of the past couple weeks. I am so glad to not be getting chemo today.
In a short-notice decision, I bought tickets for Seth and me to visit my friend George and his son Bennett in Southern California (Redlands) this weekend. I'm excited about that. Carpe Diem!
Ethan
Saturday, October 2, 2010
Saturday
Today I spent the morning and early afternoon laying in bed, while my mom took care of Seth and Grace took Miles to a fall fruit festival. I got more energy as the day went on, which is typical. In the late afternoon Grace, Miles, and I walked down to Boulevard Park and then over to Village Books in Fairhaven. Pics of Miles at the festival (taken by Grace) and the three of us in the play structure at the park: http://remmel.shutterfly.com/1874
The one thing I wanted to accomplish today was to cook dinner for all of us, which I did. Chicken tikka masala (one of my favorite dishes) and roasted root vegetables with garlic sage butter and Marcona almonds (a new recipe for me).
Bad sports day for me. SF Giants lost, failing to clinch a playoff spot (but they still can tomorrow), and Stanford lost in college football. The good part was that Seth sat next to me and cuddled during the Stanford game.
Some thoughts from today:
I enjoyed visiting Village Books. It's a really nice bookstore. I had that feeling of "there are so many things that I would like to read, and there is no way that I could ever read them all." Especially now. I happened to pick up a book called "Sick Girl" by Amy Silverstein. It's about her battle with a serious illness, which she survived. I read the first chapter quickly, and it was so familiar. She's trying not to let her kid see how bad she feels, she is proud of a minor accomplishment (packing a suitcase) but feels like other people don't realize how much effort it took her, she thinks about death, etc. I had a feeling of "wow, a lot of other people have gone through what I am going through." It didn't make me feel any better, but it made me realize that I often think about my illness as a unique and personal affliction, and not as a sort of experience that many people share.
Speaking of death, it's weird to think about it so much these days, and to try to balance that with daily living. It's strange to switch back and forth from thinking about things like "do I want to receive CPR if my heart stops?" and "do I want my body to be cremated?" to things like "what do I want for lunch?" and "why does the dishwasher jiggle?" That was another minor accomplishment today - I fixed the dishwasher from jiggling. It only took me three days (but no trips to the hardware store).
OK, good night.
Ethan
The one thing I wanted to accomplish today was to cook dinner for all of us, which I did. Chicken tikka masala (one of my favorite dishes) and roasted root vegetables with garlic sage butter and Marcona almonds (a new recipe for me).
Bad sports day for me. SF Giants lost, failing to clinch a playoff spot (but they still can tomorrow), and Stanford lost in college football. The good part was that Seth sat next to me and cuddled during the Stanford game.
Some thoughts from today:
I enjoyed visiting Village Books. It's a really nice bookstore. I had that feeling of "there are so many things that I would like to read, and there is no way that I could ever read them all." Especially now. I happened to pick up a book called "Sick Girl" by Amy Silverstein. It's about her battle with a serious illness, which she survived. I read the first chapter quickly, and it was so familiar. She's trying not to let her kid see how bad she feels, she is proud of a minor accomplishment (packing a suitcase) but feels like other people don't realize how much effort it took her, she thinks about death, etc. I had a feeling of "wow, a lot of other people have gone through what I am going through." It didn't make me feel any better, but it made me realize that I often think about my illness as a unique and personal affliction, and not as a sort of experience that many people share.
Speaking of death, it's weird to think about it so much these days, and to try to balance that with daily living. It's strange to switch back and forth from thinking about things like "do I want to receive CPR if my heart stops?" and "do I want my body to be cremated?" to things like "what do I want for lunch?" and "why does the dishwasher jiggle?" That was another minor accomplishment today - I fixed the dishwasher from jiggling. It only took me three days (but no trips to the hardware store).
OK, good night.
Ethan
Friday, October 1, 2010
Reprieve!
Grace, my mom, and I met with my oncologist Dr. Nestor this afternoon. We decided to change my chemo schedule, so instead of two chemo infusions on Oct 4 and Oct 18, I will have one the week of Oct 11. This has several advantages. It gives me an extra week off now and before my planned trip to the Bay Area from Oct 25 to Nov 1. I could definitely use a break, as the fatigue during these last couple rounds of chemo has been discouraging. There doesn't seem to be much point in continuing a treatment plan indefinitely that leaves me too tired to do anything on most days.
This change also spares me from being one of the first patients to receive chemo at the new infusion center opening on Monday. Infusion services are moving from their current location to a temporary location at the hospital before moving someday to a planned new cancer center. I'm sure it will be a madhouse at the new location on Monday, and I hope things will have settled down a week later.
This change also means that we will meet with my second-opinion oncologist, Dr. Whiting in Seattle, before my next chemo. We meet with Dr. Whiting on Oct 7, so now we will be able to get his opinion on my treatment plan options before my next infusion.
By the way, my CEA number (blood marker of cancer activity) this week remained at 1.0, which is low, which is good.
OK, off to bed!
Ethan
This change also spares me from being one of the first patients to receive chemo at the new infusion center opening on Monday. Infusion services are moving from their current location to a temporary location at the hospital before moving someday to a planned new cancer center. I'm sure it will be a madhouse at the new location on Monday, and I hope things will have settled down a week later.
This change also means that we will meet with my second-opinion oncologist, Dr. Whiting in Seattle, before my next chemo. We meet with Dr. Whiting on Oct 7, so now we will be able to get his opinion on my treatment plan options before my next infusion.
By the way, my CEA number (blood marker of cancer activity) this week remained at 1.0, which is low, which is good.
OK, off to bed!
Ethan
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